Useful Links
Dernière mise à jour 29 août 2021
Thanks to social networks, our “8p” families have been able to find each other and cultivate fantastic relationships of support, mutual help, exchange and, above all, sharing of ideas. La Maison 8p was born from these relationships and our teamwork between parents surrounded by professionals involved in the success of our children. Here you will find the sites and Facebook groups that we frequent to learn and to exchange good – and bad – practices.
English-speakers PODD International private group on Facebook hosted by La Maison 8p! Exchanges around the PODD (Pragmatic Organizational Dynamic Display), a robust communication tool that can be chosen by a family for their non-oralizing child, or by an adult user of alternative and augmented communication (AAC) who wishes to exploit this way of communicating. Group that exchanges mainly in English, but thanks to Facebook the messages are automatically translated into other languages, so English is not a prerequisite! You can join us here: English-speakers PODD International.
Rare Connect Community invdupdel8p: private group, but open to anyone concerned in one way or another by invdupdel8p. Here, we can also invite professionals from the medical and scientific community, in order to discuss directly together. This is not a place to exchange messages in a “casual” way, and requests for medical and/or therapeutic advice are strictly prohibited. It is rather to exchange information that can be shared between families and professionals. Come join us!
Project 8p Community private group on Facebook: discussions around invdupdel8p and everything that may concern the consequent symptoms, with emphasis on scientific research Project 8p Community.
8p23.1 Deletion/Duplication Syndrome Family Group private group on Facebook: discussions around invdupdel8p from a more intimate point of view focused on family experiences rather than research.
French-speaking CAA: improved and alternative communication private group on Facebook: various exchanges around Alternative and Improved Communication (AAC), but not limited to this subject; also discussions around disability in general, legal procedures related to disability, and more. There is a lot to learn, it’s a mixture of parents, professionals specialized in AAC, people curious to discover AAC, professionals who work on the programming of communication software, trainers in AAC, etc! You can join us here: CAA Francophone.
Friends and Partners of La Maison 8p :
Project 8p – American association concerned with scientific research on invdupdel8p.
ASDID – Spanish family association, led by Mrs. Tere Pavón Bautista.
8p Heros CZ – association, led by Mrs. Martina Konečná.
Hannah, Me and invdupdel8p – Facebook page and blog, led by Ms. Rebecca Pender.
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